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My experiences with Peyronies and interferon and vacuum stretching

bowandarrow

Like the average guy out there I had never heard of Peyronie’s Disease until mid-to-late 2009 when I began to see some changes in the shape of my penis while erect. For lack of a better description I began to see hard “ridges” on the left and right sides of my shaft that pointed inwards resulting in a narrowing of my shaft just before it connects to the head of my penis.

Being a network engineer and very familiar with the Internet I of course began to do as much research as I could into what might be causing this shape change. This is how I stumbled upon a condition known as Peyronie’s Disease. I think it is important to explain at the very beginning to those unfamiliar with Peyronie’s Disease that in my view it is really not a “disease” at all. The word “disease” has such negative connotations. Peyronie’s is really more accurately described as a “condition.” At least that’s the way I prefer to think of it.

In short, Peyronie’s is a condition where hardening plaque begins to form in layers of erectile tissue along the sides of the penis sometimes causing pain and extreme curvature of the penis. Cases range from mild to severe. While the pain usually decreases over time the shape changes may become permanent.

The cause of Peyronie’s is unknown. Some speculate that there may be a genetic predisposition to developing the condition as it is related to fibrosis of other elastic tissues in the body such as the hand (Dupuytren Contracture) or foot. That being said, most physicians believe Peyronie’s is initially caused by a sudden bend or injury to an erect or semi-erect penis that damages the tissues. Once this injury occurs plaque slowly begins to develop around the damaged area. The trouble with this theory is many men who develop Peyronie’s have no recollection of injury to their penis, perhaps myself included. When I think back, while I believe that it may be possible during a particular round of love making perhaps there might have been a sudden bend to my penis that was noticeable while my wife was on top, I have no memory of being in pain, or of seeing anything unusual suddenly develop after such an experience. My Peyronie’s shape changes snuck up on me slowly over time so, like many men, it is difficult to pinpoint an exact cause it my case.

So the very first things you find out about Peyronie’s are all negative and pretty depressing to say the least. It is a rare condition affecting a small percentage of men. No one knows the exact cause for sure. Some say it is an incurable condition. It is an extremely difficult condition to treat. While the pain may decrease or go away the shape changes are usually permanent. If you have a significant bend due to Peyronie’s it can make sexual intercourse difficult if not impossible. And then you’ll find out that because it is a rare condition and difficult to treat very few doctors have up-to-date treatment information and specialized knowledge about how to help patients with the condition.

In my experience the first doctors and urologists I went to see were worthless. Quite frankly, they gave up right at the very beginning. They weren’t interested in trying to help me because this is a very difficult condition to treat and they probably had no idea of what to do. They had extremely limited information about the condition and didn’t want to take the effort to learn about the latest methods for treating Peyronie’s.

I went to see one guy and I could tell within the first 5 minutes that he had no interest whatsoever in helping me. He couched it in terms of, “Well, your Peyronie’s isn’t as bad a many other men because you just have ‘ridges’ and not a bend so we wouldn’t go near you with surgery. I mean, how big a deformity is it anyway? It’s really not that bad and you can live with it.”

I was pretty disappointed when I left that doctor’s office and thought he was a jerk. This is my PENIS we’re talking about here and the shape is changing before my very eyes!! And this guy just blew me off because he either didn’t want to take the effort to help me or thought he couldn’t make any money from helping me! Then after I got home I started getting angry. Then I REALLY started doing research on Peyronie’s and was determined to not give up. People who know me know I’m really not very good at giving up. I suck at it!

I came across multiple websites about Peyronie’s, many claiming to have a miracle cure. All I kept thinking was is if it looks too good to be true, it probably IS too good to be true. Peyronie’s, a little understood hard to treat ailment, is a classic market for charlatan’s looking to make a quick buck off the unfortunate, so beware!

There were a few alternative medicine websites that had some good information, but of course they are in the business of selling you supplements, and to the best of my knowledge there is no scientific evidence that Vitamin E or any other supplements actually reduce the plaque caused by Peyronie’s.

The main issue with all these websites is while they claim to have products that have worked for some of their customers, and that may well indeed be the case, they cannot guarantee that their products will work for YOU! In short, they have no objective, scientific studies that support their claims that their products are effective in reducing Peyronie’s plaque. And that’s what I wanted, hard, cold evidence.

It was at this point in my research that I started searching for Peyronie’s EXPERTS in the San Diego area where I live. I certainly didn’t want to waste any more of my valuable time going to see doctors who really had no idea what they were doing. I finally came across Dr. Irwin Goldstein, Director of San Diego Sexual Medicine (SDSM).

Dr. Goldstein has a very informative website that I found helpful(www.sandiegosexualmedicine.com). I also soon learned two other things about SDSM, one good and one not so good (on the surface). I discovered on his website that Dr. Goldstein offers free 15 minute phone consultations that allow you to discuss your concerns with him personally before you make an appointment. I had never heard of such a practice before.

Then, I found out that SDSM does NOT accept any form of health insurance. I’ll be honest that this kind of concerned me in the beginning because I was so accustomed to my doctors visits being covered by my health insurance, and I know how expensive doctors can be. It turns out that there is a very good reason why Dr. Goldstein and SDSM do not accept health insurance.

Unfortunately, I’ve had to deal with health insurance companies a lot during the past several years and quite frankly it’s a pain. Our health insurance system has gotten so screwed up it’s now almost impossible for a specialist like Dr. Goldstein to spend the amount of time he needs with his patients in order to really treat them most effectively.

Doctors who accept health insurance are now forced to run as many patients through their treadmill of “health care” as humanly possible just to cover their operations costs alone. Dr. Goldstein refuses to participate in this system because he is determined to dedicate the time necessary to understand his patients needs, determine the best possible treatment strategy, and follow through with compassionate, professional health care from beginning to end.

And, all that being said, most of Dr. Goldstein’s patients (myself included) simply file their own claims with their health insurance companies and get reimbursed according to their plan. So most of the services provided by SDSM are indeed covered by your health insurance, you just need to file the claim yourself. In my opinion this minor inconvenience was well worth it for the outstanding care I received from Dr. Goldstein and his staff.

Dr. Goldstein is an expert in sexual medicine with over 30 years of experience in the diagnosis and treatment of sexual dysfunction in men and women. Do yourself a favor and read his resume, it will knock your socks off! In addition, Dr. Goldstein is also the Editor-in Chief of The Journal of Sexual Medicine which allows him access to the very latest techniques and treatments available for sexual health issues. This turned out to be extremely valuable for me personally.

After discovering Dr. Goldstein and completing my research on SDSM I called and made my free 15 minute phone consultation appointment. I was pretty nervous when the day came to finally speak with Dr. Goldstein, to put it mildly. In my mind this might have been my last chance to find something concrete I could do about my Peyronie’s condition.

Speaking with Dr. Goldstein on the phone was delightful. He was organized, attentive, knowledgeable, thorough, and certainly made the most of our 15 minutes together. And Dr. Goldstein was obviously significantly more interested in helping me than any other doctor I had seen to that point by far. Dr. Goldstein confirmed many of the things I already knew about Peyronie’s. But he also said that there WAS a treatment available that actually has scientific studies supporting its effectiveness. This was the first time I had heard of any Peyronie’s treatment that actually had scientific studies backing it up.

As editor of the Journal Sexual Medicine Dr. Goldstein reviews all the latest studies and treatments available for Peyronie’s as well as other sexual health issues. He offered to send me PDF copies of all the latest pertinent articles covering all of the current Peyronie’s treatments available and their effectiveness, including the treatment he was recommending for me. Dr. Goldstein actually communicates with his patients via e-mail…how cool is that!

So after 15 minutes on the phone with Dr. Goldstein I had more valuable information on Peyronie’s than I was able to find on my own after weeks and weeks of research. I read all of the journal articles Dr. Goldstein sent to me from beginning to end. I spoke with my wife about our options at length. And I finally made my first office visit with Dr. Goldstein.

Meeting Dr. Goldstein in person was great. He is the quintessential doctor type, well spoken, compassionate, and funny. My first office visit with Dr. Goldstein included an unhurried, complete discussion of Peyronie’s and the treatment options available. We covered much of the information he sent to me in the journal articles. My visit also included a complete physical examination where I got to introduce the doctor to my particular version of Peyronie’s. Dr. Goldstein confirmed my Peyronie’s and once again recommended a course of treatment.

Dr. Goldstein recommended a series of intralesional interferon injections combined with vacuum stretching therapy to loosen the plaque from my Peyronie’s. This course of action was fully supported by the literature I had reviewed as the only real course of treatment that has scientific evidence supporting its effectiveness. This scientific evidence was extremely important to me as I certainly didn’t want to go on any wide goose chases that had a limited chance of success.

After my office visit with Dr. Goldstein I went home and once again discussed all of our options with my wife in detail. I really didn’t want to do nothing, but the intralesional interferon injection treatment would be a long road indeed. After mulling it over some more we finally decided to try the treatment Dr. Goldstein was recommending. We figured we’d give it a try and if it didn’t seem like it was really making any difference we could always stop treatment at any time. Dr. Goldstein agreed with this strategy.

In short, intralesional interferon injection treatment involves an injection or injections at the base of your penis to make it numb. Once your penis is numb Dr. Goldstein then injects the interferon medication directly into the Peyronie’s plaque in your penis. Over time the interferon slowly dissolves the plaque. The medication in conjunction with manually vacuum stretching therapy loosens the plaque. Once the plaque has diminished the normal shape of your penis returns. Vacuum stretching therapy involves using a penis pump to exert negative pressure and draw blood into your penis. It basically gives you an artificial hard-on. For my treatment Dr. Goldstein and I settled on 10 minutes of vacuum stretching therapy twice a day. The number of intralesional interferon injections you receive is based on total volume of medication. The journal studies tested around 20 million units of interferon if I remember correctly. So if you had 2.5 million units per injection you would have a total of 8 injections. That being said, in Dr. Goldstein’s experience (which is considerable!) higher doses of interferon are more effective at dissolving the plaque. So if you had 5.0 million units per injection on the high end you would have a total of only 4 injections. Injections are usually given every two weeks, but schedules can be tailored to meet a patient’s particular needs.

A key factor in determining the volume of interferon per injection is side effects. Interferon produces flu-like symptoms a couple of hours after the injection. These symptoms can last from several hours to all night long. Most patients usually feel fine the next morning. To mitigate the side effects you take something like Ibuprofen before and after your injections.

When I asked about the flu-like symptoms no one could really give me a straight answer as to what exactly it would feel like. So for others’ benefit I will spell out EXACTLY what happened to me. First of all, at 2.5 million units I experienced very little flu-like symptoms at all. When I “graduated” to 5.0 million units I found the flu-like symptoms varied radically. One time I was literally shaking uncontrollably for 3 hours. Another time I fell asleep and the cold never came at all!

The flu-like symptoms of interferon I experienced included:
Cold feeling (sometimes cold flashes, sometimes consistent cold)
Shaking from the cold
Hot, itchy, sweaty skin
Achy muscles
Woozy and weak feeling
Thick feeling in head (but not a headache)
Tossing and turning while sleeping

So if you’re still reading my personal account you’re probably freaking out a little by now. Injections in my penis you say! And side effects. Wow, I gotta think about that… But in all honesty the treatment is really not that bad. While I was considering whether or not to pursue this course of treatment Dr. Goldstein put me in touch with one of his other patients who had great success with intralesional interferon injections. He had a significant bend and now his penis is almost completely straight. This gentleman explained the treatment to me like this, “It’s like going to the dentist.” And it really is just like that.

I personally found the most unnerving part of the treatment is when Dr. Goldstein grabs a hold of your penis after it is numb (and the pun here is definitely intentional!). It’s just plain WEIRD! It doesn’t hurt at all because your penis is numb. But your penis isn’t SUPPOSED to be numb!

After your penis is numb Dr. Goldstein injects the interferon into the plaque in your penis but again you don’t usually feel anything because your penis is numb. From time to time I felt a little strong pressure but never really any pain per se. I will have to say in all honesty Dr. Goldstein was incredibly skillful and careful while injecting the interferon.

Once the injections are done Dr. Goldstein wraps your penis in gauze, you squeeze it for about 5 minutes, put on your pants, and go home. In a couple of hours you take some Ibuprofen or Motrin PM, jump into bed, and get ready for any side effects. You shake, feel hot, achy, itchy skin and a thick feeling in your head. You finally fall asleep and toss and turn for a good part of the night. You wake up in the morning and you feel fine. That’s it. It’s really like going to the dentist in many ways and it’s really not that bad.

Now for the payoff… Patients who undergo intralesional interferon injection treatment having varying degrees of success (another pun, sorry about that one!). While some patients do not respond well, many patients do. The gentleman I mentioned above had terrific results. His exact words to me were “Dr. Goldstein did me a great service.”

In my personal case I believe via objective photographic evidence that nearly 70%-75% of my plaque has dissolved. As I mentioned earlier my Peyronie’s is a little different than most. I do not have plaque on only one side of my penis causing a bend. I have plaque on both sides of my penis causing “ridges” and a narrowing at the end of the shaft.

There is no doubt that the treatment Dr. Goldstein recommended has been effective in significantly improving my Peyronie’s deformity. While I still have some shape changes remaining it’s a whole heckuva lot better than it was before. And I’ll take that over doing nothing any day! And, I’m still seeing improvement and have one more injection left to go. Once the interferon is activated it is possible to see continued progress even after injections cease.

And there’s even more hope on the horizon. Dr. Goldstein is part of a select group of doctors who are about to begin a double-blind trial study of a new drug for Peyronie’s called Xiaflex. There is great hope that this new drug will be significantly more effective than interferon in dissolving Peyronie’s plaque. As I said earlier, Dr. Goldstein is on the cutting edge of treatment for sexual health issues. He once said to me one of the things he finds most interesting about his practice is the opportunity to always look for ways to do things quicker, better, more efficiently, faster.

So that’s one man’s tale of Peyronie’s “Condition.” It is my firm belief that if you have Peyronie’s and you do nothing you are making a mistake. I don’t care what anyone else has told you. I have Peyronie’s, I’m going through it, and doing nothing would have been a huge mistake for me. Whatever you do be proactive, don’t give up, get the real facts, and as Dr. Goldstein has said on many occasions “do something about your condition.”

I would like to finish my personal account be saying a few things about Dr. Goldstein and the staff at San Diego Sexual Medicine. Dr. Goldstein and his staff are some of the most kind, caring, funny, compassionate, understanding, patient, knowledgeable, and helpful medical professionals I have ever encountered. And it’s not by accident. Throughout the offices and patient rooms at SDSM their Mission Statement and Core Values are posted everywhere. Not just anyone can work there. Dr. Goldstein leads by example and his staff are all top notch. Not only did I get expert help with my Peyronie’s I also made some good friends along the way, and I believe that is truly rare in the medical community.

I remember one time in the beginning when Dr. Goldstein and I were discussing options after and he had seen my version of Peyronie’s for the first time. I asked Dr. Goldstein what he would do if he were in my position. After all I figured that’s what I was there for, to get his expert medical opinion. Dr. Goldstein sat back and said the following as he was considering my options, “If this were my penis what would I do…?” How much more empathetic and compassionate can you get than that?! Truly extraordinary, especially when you consider the doctors I initially saw about my Peyronie’s.

There are some spectacular medical professionals out there available for expert guidance. If you’re seeing a doctor or urologist who doesn’t seem truly interested in helping you with your condition the best thing you can do is get rid of him. Find someone like Dr. Goldstein. It will make all the difference in the world. I wish you all the best.

1 Comment

bowandarrow
Sorry for the long delay in updating my situation. Here you go… Well, it’s been 7 weeks since my last interferon injection with Dr. Goldstein. I have been religiously continuing vacuum stretching therapy twice a day for 10 minutes per session looking for some cumulative effects from my first series of interferon injections. I have also been religiously continuing the one quarter (25mg) Viagra before bed to achieve night time erections. Dr. Goldstein sure was right about this! Every night I get great erections while sleeping and this surely must be good for further stretching of my remaining plaque.From time to time I check my natural erection and I believe there may indeed be some additional cumulative effect from the first round of interferon injections. There is no doubt that my plaque is much better than when I began treatment with Dr. Goldstein earlier this year. That being said, there is still plaque remaining on both the left and right sides if my shaft. Since we concentrated mostly on the left side in earlier treatments the ridge that was there has now shrunken to a small bump that creates some shape change. There are still two prominent ridges on the right side that still create shape change there. I have noticed a significant reduction in the ridge/downward slope on the top of my shaft that used to be quite noticeable

So overall my condition is good. We have halted the Peyronie’s progression, made good progress in reversing Peyronie’s shape changes, and are now either maintaining my condition or continuing to make some cumulative progress in further plaque reduction. Dr Goldstein has consulted with his peers and discovered that many patients who have undergone a series of interferon treatments have returned for additional treatments after a waiting period of two or three months. Most of these patients are glad they continued with an additional series or two of interferon treatments as they have seen even further reduction in Peyronie’s plaque. My understanding is some patients have had two or three rounds of interferon injections, but no one has had four rounds yet.

Based on this information I plan to return to Dr. Goldstein’s office in December to begin another round of interferon injections in the hope of further improving my condition. As I had very good results the first go around, I am optimistic that I can make additional progress with another series of treatments. And since I now know exactly where my remaining plaque is located, I will be able to show Dr. Goldstein precisely where to inject the interferon during my next round of treatments. In the meantime I will continue with the daily vacuum stretching and one quarter (25mg) Viagra routines and look for further reduction in plaque.

 

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